‘Like the worst flu you can imagine’ Kirsty Strain – a Scottish actress who has spent most of her life battling ME will speak about the condition at the screening of a documentary in Glasgow.

Burnistoun and River City star Kirsty Strain said more needs to be done to raise awareness of the illness, myalgic encephalomyelitis, which many in the medical profession still treat as a psychological problem. “Voices from the Shadows, showing at Cineworld, in Glasgow, was made out of desperation by the mother and brother of a chronic ME sufferer. It talks to patients, carers and doctors about a medical complaint that is still largely misunderstood.

Kirsty, who attended Baillieston’s Bannerman High School before enrolling at Langside College, said: “The film is the closest we’ve got to articulating what it’s like to live with ME and the impact of it.

“It goes a long way towards educating people who don’t know much about it and offers support to those who are going through it.”

ME Support Northern Ireland – News Letter. Feb. 2013

“The Long Gallery (Stormont, Parliament Buildings, Belfast) was completely silent for the one-hour duration of the film. MLAs stayed for the entire viewing, and a number of patients were in tears much of the time. There was a feeling that his breakthrough documentary should be shown far and wide, among the patient constituency and beyond it.” Words from the ME Support Northern Ireland’s News Letter – available here on the oneagleswings website.

ME Research report of the screening in Edinburgh organised by EDMESH on May 24th

“… the aim of the event was to raise awareness of the reality of severe ME, which is movingly conveyed in the film. A very large crowd of over 150 people had gathered for the free showing, and in attendance were Dr Nigel Speight, a paediatrician (now retired) who specialised in ME, and Dr Vance Spence of ME Research UK, who held a joint question and answer session after the showing.

As the audience watched, the one-hour feature documentary revealed itself to be as compelling and intensely moving as its billing had suggested. The voices of severely affected people with ME are rarely heard, despite the fact that many of them have a torrid time, and the film’s raison d’etre is to bring their plight to the attention of as many people as possible.” Read the full report here.

All in the Mind? – article in the Mail Online by Sonia Poulton. May 10th. 2012

“Based on no personal knowledge whatsoever – fortunately neither I or my loved ones have M.E. – my judgement was gleaned from how the world has portrayed the illness. Like millions of others, I have seen M.E. through the eyes of the medical establishment, the Government and the Media. The picture has not been good.

…but there was something about ‘Voices…’ that stopped me in my tracks.

One of the reasons the film had such an impact is because it challenged my deep-seated preconceptions about M.E.

Through ‘Voices…’ – and the subsequent research I have conducted – I have come to realise that what I thought I knew about the illness was a fallacy but, more importantly than that, was actually detrimental to those affected.”

Article by Scott Jordan Harris in the Guardian online. March 20th 2012

“On Sunday 18 March, Emily Collingridge, a beautiful 30-year-old activist and author, died after she was apparently no longer able to struggle against the chronic illness that had afflicted her since she was six. Major news organisations have all but ignored her death – the death of a noteworthy campaigner while suffering from the very condition she tried to persuade the world actually existed – just as they continually ignore so many important stories about the illness she had….

For anyone who wishes to understand the agony ME can inflict, and the dangerous ignorance endured by many who have it, the film is a must-see.”

Press release by Dr Eliana Lacerda – CFS/ME Observatory – the London School of Hygiene & Tropical Medicine. March 2012

“Voices from the Shadows is a poignant documentary, which unveils the reality of people with severe ME/CFS and their carers. We decided to show it at the London School of Hygiene & Tropical Medicine to draw attention to this health problem that has been stigmatised for decades. We wanted to target a medical audience in an effort to raise awareness about this disease to those directly or indirectly involved in health care decision-making for people with ME/CFS.

“Patients have often been misdiagnosed, disregarded, and treated with prejudice, with serious consequences for both them and their carers. We hope that this type of initiative helps to promote a revision of preconceptions about ME/CFS in health researchers and professionals, and to bring renewed interest for research in this field, particularly in light of mounting biomedical research evidence in ME/CFS.”

I can’t be impartial about this film, and I can’t conclude my review of it – if this is a review of it – with the customary, balanced summation of why you should, or should not, try to see it. But I can, with total sincerity, say this: if I could make everyone in the world see just one film, this would be the film I’d choose. It’s my film of the year. It’ll be my film of the decade.
As a critic, I spend my life hoping to find films that will be speak to me. “Voices in the Shadows” goes beyond that. It is a film that speaks for me. And I want you to hear it.

Roisîn Wilson – ‘I never imagined my sister would die.’ Jan. 24th 2012
Read the full article on the Irishtimes website (Not a review but a very moving article referencing the film)

When Sophia got sectioned, the event was tape-recorded. This profoundly moving audio is included in the award-winning documentary Voices from the Shadows , a film made out of sheer desperation by the family of a girl who suffers with severe ME.

This documentary includes the stories of other ME sufferers and carers, as well as expert medical opinion and facts. This film needs to be shown to as wide an audience as possible.

Voices from the Shadows will literally save lives and spare much unnecessary suffering and bring much-needed understanding about the reality of ME. This documentary urgently needs a way to be seen by the masses. Please go to Voicesfromtheshadowsfilm.co.uk for more information.

It certainly should be shown on national television. Unless you could live our lives, you would not believe that ME patients are so badly treated. On the film, some had died and that too will amaze people who are unaware that people do and can die. In the film, we went through the pain of their deaths and the anguish of the families. One of the most upsetting moments was a young woman, totally bed-bound, who lived in a darkened room and was sensitive to any sound. The authorities decided to section her under the Mental Health Act as a psychiatrist had persuaded social workers that the illness was all in her mind. What happened next I would have thought impossible in modern Britain but nothing surprises me any more.

The emphasis was firmly on the mistreatment, the lack of availability of appropriate treatment, the devastating effects of graded exercise, the struggles (not always successful) to keep suffering relatives out of the hands of professionals who would impose it on them, and otherwise treat them harshly…….

In short, this was a very powerful documentary on this most pressing aspect of the ME situation..…. While this documentary names no names in terms of who is responsible for the abuse (as, for example, a Panorama documentary in 1999 did) and does not mention the role of people like Simon Wessely, Peter White et al, or even what parts of the country the sufferers came from it does show that the abuse is widespread and has carried on long after it should have been obvious that the treatments they had been using did not work, and long after the scandals of the 1990s were exposed. One would hope that more people in the UK can see it, and particularly that it can be made available to those in the nursing and medical professions, and particularly students and those at a junior level as their minds are the most open to influence (there are quite a few junior doctors and GPs who have never heard of ME).

This compassionate and moving exposé bears witness to the tragic consequences of psychiatric prejudice and medical ignorance concerning one of the most prevalent illnesses of the 21st century. The film foregrounds the riveting stories of several British families confronting what must be everyone’s worst nightmare: a loved one suffering a life-altering illness that leaves him or her bedridden and in constant pain, with no apparent cure. But what if the medical establishment made the situation worse instead of better? Such are the heartbreaking circumstances of the under-reported controversy surrounding ME (myalgic encephalomyelitis), aka chronic fatigue syndrome. Firsthand accounts from patients, caretakers, and medical experts paint a shockingly confused state of affairs—and underscore the urgency and frustration around this issue. A call to action for anyone who cares about the health and wellbeing of their community, this powerful film is equally a tribute to those whose voices must be heard.—Atissa Manshouri

Press Release – Mill Valley Film Festival

Can a Film Make the Difference?

Voices From the Shadows, A Film About ME/CSF at the Mill Valley Film Festival

SAN RAFAEL, Calif. (September 22, 2011) –The Mill Valley Film Festival, produced annually by the California Film Institute, is proud to present the World Premiere of VOICES FROM THE SHADOWS, a poignant exposé on patients and their families facing the debilitating, yet often misdiagnosed, disease myalgic encephalomyelitis (ME) at the Christopher B. Smith Rafael Film Center on Saturday, October 8 at 2 p.m. The film will be followed by a panel of notable professionals, including Dr. Jose Montoya of Stanford School of Medicine and David Tuller, a lecturer at the Graduate School of Journalism at UC Berkeley, who will discuss current developments, Tickets for the World Premiere of VOICES FROM THE SHADOWS at the Smith Rafael Film Center are $13.50 general admission (CFI members $11.00) and can be purchased online at: http://www.mvff.com or at the Smith Rafael box office.

Voices validates the accounts of patients suffering from this chronic illness and vindicates the stories of those whose lives the disease has claimed, dispelling the myth that ME is a psychiatric condition. Bearing witness to this severe form of Chronic Fatigue Syndrome (CFS), Natalie Boulton and Josh Biggs’ illuminating film reveals the challenges of patients struggling with this neurological illness and the neglect and abuse many have met with at the hands of physicians. “Nowhere in the public domain was there any sign of the terrible severity of the illness I saw driving many intelligent, creative, positive and courageous young people, into lives of devastating dependency, isolation, pain and steadily deteriorating health. Not only that, but the abuse suffered by some patients who were being harmed by professionals was going totally unrecorded and unnoticed. Patients were, and are, dying invisibly…” recalls Boulton, discussing her inspiration behind the film. The film sheds light not only on the medical ignorance and psychiatric discrimination surrounding ME in the United Kingdom, but also the growing awareness and significant strides medical professionals are making on a global platform.

Part of Mill Valley Film Festival’s Active Cinema program which seeks to raise public awareness and promote civic engagement, Voices features compelling, life-affirming stories from members of society who have historically been relegated to the background. Sharing their courageous stories, ME patients, friends and family members lend their support to categorizing the disease as a physical illness, preventing further misdiagnosis and ultimately improving hospice care. Following the film, Boulton will be joined by Montoya, Tuller and author and ME patient, Christina Caskey, to discuss progress in research and treatment in the US and advancements toward changing public opinion in the UK.

The film follows various bedbound patients – from early home movies of happy children through the random strike of an “insult” (virus) to later illness severity. Caregivers and patients are interviewed. All interviews are set up and edited for maximum clarity and impact. The timing and fusing of many of the images is first rate. Care was taken in building and constructing every frame. The music is also carefully chosen and interwoven with the images for maximum effect. The music is subtle and persuasive, used with discretion and for visual and emotional emphasis. Particularly striking is the cello music, an instrument whose sound is so compatible with the “aching distress” of the subject. The bottom line is that every single square inch of this film is “considered” – to heighten the difficulties of ME and the obstacles that these patients face. Josh and Natalie have a close and abiding “attachment to the subject” – and it shows.…

It is my belief that this film will have a major impact on educating a wider audience about the true nature of ME. Natalie and Josh have made the absolutely correct decision to focus on the very severely ill, and on their medical treatment (or non-treatment). “Voices from the Shadows” depicts “the very bottom” of the illness, what I like to refer to as “the core of the illness”. This was an important choice – as this “bottom” is where the severity of the illness can be most clearly seen –and tested. More clinicians, more researchers should seek access to these patients to find out what really is happening in this illness… Too often clinicians see patients who are “half sick”, patients that can actually get out of their houses into a doctor’s office – so that they do not get an entirely clear or full view. But what about those who cannot move -or cannot be moved? Who sees them?

Josh and Natalie have made a number of exquisite decisions regarding this movie. In the first place it is the right length, a few minutes over an hour long. Within this span of time the story builds through a set of pictures and interviews of patients and physicians. The three principal medical personal reappear throughout the film giving it a great continuity. The pacing and image cutting/building is first rate, riveting the viewer along the path to a catastrophic ending. This film is not for everyone. I do not recommend that patients watch this film. But for others, clinicians and doctors, it is just the ticket to sober them up a bit about this illness.
This film is not a “Professional” movie made by outsiders with a large budget and a large crew. This is a first rate documentary made on a low budget by two people who have access to the “core of the reactor”. There has never been a film like this, and there is apt not to be one again in the near future. This “core terrain” is a difficult place to access, as the illness itself being “stress-related” (“Picking up a glass of water is stress.”) disallows the spectator or helper getting close to the patient. Getting close requires great empathy with the patient’s particular situation, and one has to have great experience being around these ill patients. These two, Josh and Natalie, have a special key to get into the inner sanctum, and they do a marvelous job in a very trying situation.
One quibble that I have about the film is that it does not explain enough the condition of the patients that one sees in the images. For instance, several of these patients are wearing what appear to be headphones. In actuality, these are construction sound blockers. These patients have severe hyperacusis (noise sensitivity) along with photophobia (light sensitivity). Many wear masks twenty-four hours a day. Often they are afraid of sound, as it is incredibly painful to them. Certainly they wish they could listen to music, but it is impossible. Many patients live totally in isolation, in the dark, unable to see, hear or talk. Sometimes a patient has to have a sheet suspended above them, as the contact with the sheet is too painful.
Perhaps this film will do its part in hammering home the true nature of ME. Anyone who looks at this film is going to ask themselves a question. Is this the fatigue illness where patients lounge around or place their heads on the table in class, or drop dishes in the kitchen? Does this look like a “yawning” disease? Or does this depiction of ME indicate a virally (or retrovirally) induced sickness with serious autonomic and immune incapacities? ME is a serious neurological illness that include attacks on all senses – sight, sound, touch, smell, as well as the brain and every other organ in the body. Watch this film and see for yourself.
Too many doctors and too many researchers and too many friends and family do not want to go down the road to look at this illness. There are reasons why so many people turn away from the patients – and leave them abandoned and bereft. The illness is very Medieval and frightening. Most people, most doctors, most researchers, look away. This movie will help people take a good look. This movie will help wake people up.
And yet the film does focus on “those who do not back away” – the caregivers. These caregivers are trying valiantly to save their loved ones, but the stress is in their eyes, in their movements. It is a very difficult position to be in, to chose to move in close and support the very ill patient. Moments of interchange between the caregiver and patient are excruciatingly poignant and painful. This illness is terrible for the patients. It robs them of much of life’s normal activities and interaction, and yet the caregiver, in his or her giving, suffers terribly also – and this film delivers that message. A properly balanced interaction between caregiver and patient – something that is extremely difficult to get right – is depicted with extraordinary sensitivity by these filmmakers.
….. The film will disabuse the viewer of any false notions that they might have had about this illness, and replace it with known facts and reality. “Voices from the Shadows” is a labor of love. It strikes from the heart – to the heart. Everyone who has an interest in this illness should see this film – from beginning to endProf Chris Cairns 9/21/11